Parkinson's and DBS: the skinny

This post is for Parkinson's patients, family, carers, or anyone who knows someone with the disease. My husband, Pete, is into his 15th year. In 2012 things had begun to unravel - he'd reached the end of his 'honeymoon' period with his meds, and was in a pretty awful state. Thankfully, he was eligible for DBS (Deep Brain Stimulation) and happened to be offered the new system from Boston Scientific. This was done under the absolutely amazing Neuroscience department of Frenchay hospital in Bristol. We've not looked back; so profound was the change. We owe a great debt of thanks to Dr. Whone and Prof. Gill, and of course Boston Scientific.
Over the next two years, I became very curious about the whole DBS thing for PD patients, and with Boston Scientific well under way now in the US to get FDA approval, I wrote a three part paper for those that will be facing this huge - and hurried - decision. I hope it helps!
All facts have been checked and I have my sources secured. It was intended for publication by the EPDA (European PD Association), but was nixed on the grounds of language translation. This final draft was the one I sent, so it took until the end of 2013 before it was ready. 
I had called it first off 'DBS for Dummies'....until I realized it was I who was the dummy!
I try to keep things simple (I certainly ain't no scholar!), informative and hopefully, an easy read; it shows my particular sense of pathos, I hope? I want to help those that are facing this right now and in the future.  And, no. I don't work for Boston Scientific: I just really appreciate their technology. It's a system that's also used for Dystonia - a particularly awful disease, as if there's something worse!

Please pass this on; it'll hit the right people eventually!

DBS 101: the crash course 2013                                               

Let’s start with a brief history. Professor Alim-Louis Benabid, of Grenoble, France, is the accredited father of today’s DBS. That is to say, it was he who discovered that high-frequency pulses, introduced into the correct target of the brain, reduced Parkinson’s symptoms.

But wait! What about Spiegel & Wycis, who in 1947 published their paper ‘Studies in Stereoencephalotomy’. Respectively Neurologist and Neurosurgeon, they were busting nuts to get away from the appalling destruction caused by frontal lobotomies for psychiatric patients. It wasn’t long before these guys caught onto motor-function disease, so que?

Or Irving Cooper? Who in the 1960s, nicked the internal carotid artery of a brain surgery patient, inducing a stroke but also causing cessation of tremor on the stoke side?

Or Don Richardson? He performed DBS in the 60s too - for pain-management – complete with an internal battery and external control. What’s up with that?

Okay, we better sort this out. Of course modern-day DBS has an eclectic background, like most things in life that comes from the culmination of a great deal of wonderful, eccentric, painstaking and sheer graft of many, many people. And,  naturally, a copious degree of oopsies. That’s a GOOD thing, by the way. Some of the most tasking problems that life throws us are sorted out by accident – you probably know that.

Before Prof. Benabid, ablative surgery – Pallidotomy, Thalamotomy  or Subthalamotomy - for Parkinson’s was the op du jour. It was invasive surgery, as selected bits of the Globus Pallidus or Thalamus were destroyed by a heated probe. Sounds scary, but it was all they had, and it worked pretty darn well….risks aside. Michael J. Fox had a Thalamotomy in 1998, and he’s doing okay. Thankfully, it’s still possible (depending on the degree and area previously lesioned) to have DBS. That’s Deep Brain Stimulation, NOT Deep Brain (S)Incineration. Yup…just made that up.

What Neurosurgeon Prof. Benabid did was nothing short of a brilliant, slightly dangerous (well, not in comparison to what he already was doing) and totally boy-like thing to do: what happens if……..? In the 1980s, Prof. Benabid was performing ablative surgery. Now, it’s important to know that these patients were awake. As standard procedure, and before lesioning the selected target in the brain, it was vital that the surgeon ‘check’ that the correct area was chosen. Like in pretty much everything else, all humans are different….including their brains. So the surgeon relied on the patient for feedback: electrodes set to physiological frequencies on the end of a probe introduced a small current of electrical stimulus. If the patient felt or reacted in a favourable way (i.e. the tremor lessoned or ceased), he’d know he’d hit the right spot. Once the target had been identified, the ablative burn would begin. However, I guess Prof. Benabid had had enough of singeing brains by then, so he decided….just for the helluva it (I like to think) just to mess about with those harmless electrical pulses. He found out, at the right frequency and pulse, this small electrical current would achieve the same effect as ablative without permanent damage.

The added bonus is  that, these days, when the cure comes, it can all come out – no harm done.

All the other guys I mentioned above? Their primary interest might have been in the brain, but not in necessarily in Parkinson’s. And, without all those ablative surgeries on patients that were awake, we wouldn’t be where we are today. Can’t even BEGIN to list those that have contributed and sweated for PD!  But I thank them all. Actually, I’m also relying on the notion that at least some of them are, um…..dead? So they don’t come a-calling. Because there’s so many more!

Right, nearly done. The brain, as we all know, is a complicated bit of bio-machinery. One wise and long-retired Neurologist told me, ‘the mysteries of the brain are the problem in itself. As soon as you think you’ve discovered the answer, so many other questions come into being that the original question is often rendered insignificant’. Humph.

It’s all very well to either stimulate or lesion parts of the brain, but to have any degree of success at it you have to pick your target exactly. Prof. Benabid & Team first used stimulation DBS in the Thalamus in 1987, then in 1993 they did the same thing, but in the subthalamic nucleus (STN). But they could not have done this without the intensive and global work being done on many levels.

One such discovery was a compound called MPTP. A big oopsy, found completely arbitrarily in 1983, when some drug-addicts started turning up at hospitals with over-night profound Parkinsonian symptoms. This compound was extremely difficult to quantify; partly because the patients themselves insisted it was heroine. As it turns out much later, it’s basically everywhere in moderation (including our own bodies). Back to the story. Authorities and scientists were also stymied because it produced no reaction in mice or rats, so they had to try primates. So they took off to their islands, cracked open their barrel full of monkeys (sorry – love hurts), and the science-heads hunkered down. Sadly….for everyone, MPTP had been found way earlier (1978) in a single case post-mortem: a 23 year old student from Maryland who was the only one to try his new designer-drug. He’d intended to make MPPP, but ended up with MPTP, and that spelling mistake cost him plenty; he developed the same symptoms. He died 3 years later in a cocaine-related matter.

But the discoveries that came from being able to induce PD in primates were pivotal in the precision-placement of electrodes for optimal effect in PD patients. Now Prof. Benabid had the how, and the where. And we’re talking about a choice of something the size of a pea.

DBS 101: no Time, no Fear                                              

One thing sticks firmly in my mind in the lead-up to DBS: time. There is none. Certainly for us, the reason was that the two years prior to my husband being offered DBS were just a maelstrom of such proportions, there simply wasn’t ‘time’ left lying around. Sure, we’d looked at it some years prior and yes, my husband’s reaction then (and also at his Neurologist’s announcement that Pete had reached max-out on the drugs, then offered DBS in 2012) was fairly typical, I suspect. I shall refrain from verbalizing the understandable fear we both felt. As Pete said, ‘‘the words ‘Deep’ and ‘Brain’ should never be put together in a single phrase’’. He has a point.

So, if you’re coming up to that stage, I hope to assuage your fears and angst: it’s pretty damn safe AND…you’ll not regret it. I say that with a fair sense of certainty after talking with a friend of mine – Kate Kelsall, who has an outstanding U.S. blog site called ‘Shake, Rattle & Roll – An insider’s view of Parkinson’s and DBS’. It was she, who has a huge base of PD followers that told me ‘not ONE of us would ever not have done it’, when I asked if she’d do it again. The risks of surgery are, basically, the same risks as any other surgery. Ah, but what about stroke? Yes, there’s that, and the literature (certainly at centres of excellent) will put it at 1%. But, in reality, it’s actually significantly less….depending where you go. Let me tell you why: my husband, for instance, was extremely fortunate to have his surgery in one centre of excellence here in the UK. Being unsure as to whether or not I should name names, let’s just say the hospital’s name rhymes with Wrenchay. His Neurologist and Surgeon there respectively rhyme with Moan and Will….all phonetically.

What’s so special? It’s the way they assess. Video of the patient off, then on their drugs are laboriously poured over by the Neuroscience and Surgical team. This gives them an idea of the patient’s specific impairment in his particular Parkinsonionism. Then there’s the MRI – a 1.5-T scanner which produces an extremely fine 3-D mapping of the brain. This is done under general anesthetic and takes 3-5 hours. Prof. Will and his Neurosurgical team will go through these images with in fierce detail to decide exactly the spot within the Sub-Thalamic Nucleus they want to hit. For my husband, he had bilateral surgery, meaning both sides. Because of the incredible clarity the MRI affords, every blood vessel is mapped, and with the soft tube probe they can dodge pretty much the tiniest vessels and structures. Once the probe is where they want it, they insert the electrode (which has a choice of 3mm placement, again, worked out before hand), CT the patient while on the table. Once they’re completely happy – bingo. It’s because of all this mind-blowing accuracy afforded partly by their equipment that the patient no longer needs to be awake for his surgery either. Double whammy. Safer than a lot of other surgeries, methinks, and deeply impressive too.

By now, if you’re thinking, ‘she doesn’t even have PD….it’s easy for HER to say!’ let me assure you that, while you’re right, I totally understand the sheer devastation of living with PD. Furthermore, if you’re coming up to that stage of having to consider it – do it. Your life and the lives of those around you will improve immeasurably. That ‘control’ that you have long lost, will be returned to quite a considerable degree. And….not having it? Unimaginable.

Let’s get to candidacy:

Certainly here in the UK (probably the same-ish globally), there are basic requirements. You must meet a mental health standard. You must not have any major underlying disease (outside of PD) that would negate or complicate the outcome. Your Neurologist must concur that your quality of life can only be improved by DBS. And you must be presumed to have a life expectancy of 5+ years (in other words, they probably are not going to offer it to an 85 year old….but I could be wrong!).

What’s the cost of DBS?

Beats me. Depends on which and where, and WHAT. However, it’s a chunk. But overall, most studies agree that it is cheaper in the long run than care and maintenance over a relative time period. And a big dent is the lowered pharmaceutical intake – you will find that you’ll need 30%+ (Pete’s at -40%) LESS Levadopa – Sinemet, L-Dopa, in all its various forms. And it should stay that way for about 5 years or so. For the recipient, that means far less Dyskinesia, which is a God-send, as it’s the accumulative side-effect of Levadopa.

Now, here’s the scoop:

There have been some eminently researched papers published recently looking at offering DBS to PDers much earlier than drug max-out. And they are getting some wonderful results. Imagine if you didn’t have to wait until the additional ravages of Levadopa compounded your already hijacked body. Imagine that your spouse and children didn’t have to just ‘watch and wait’ as you writhed about. Imagine you NOT missing the window of DBS because, in your wait, you’ve developed depression or some other condition that would exclude your candidacy. That’s possible with early DBS. That means you could carry on working, for example. In the US alone, it’s estimated that the combined and indirect cost of Parkinson’s – treatment, lost income from inability to work, social security payments – amount to about $25 billion per year. Meds cost per person are an average of $2500 per year.

Okay, so nobody wants to give up that ‘honeymoon’ period – the 6 or 7 years the pharmaceuticals will buy you. BUT, if my husband had (knowing what he knows now) considered DBS in 2008 instead of 2012, I have to ask: would he be better off? Would it have extended his honeymoon period? More importantly for his psyche, would his quality of life been better because of the years he could’ve kept up the work he was doing?

Alas, I am nowhere near clever enough to do the maths, but imagine if you could have DBS at say, two years into PD. What would that do to the honeymoon period? Could it extend it exponentially? One thing’s for sure, it would clearly extend it. And I’m guessing it would be cheaper and more compassionate in the long run.

Just to give you some idea of pharmaceutical costs, look at any one of those sites you can buy drugs from. Just for fun, Pete (my hubby) took approx. 2200mg. of Levadopa (in various compounds) per day before his DBS op. He’s down to well under half of that now. But if you were to buy the equivalent Levadopa as Sinemet (Carbidopa/Levodopa) that he used pre-op, it would be minimally $350 per calendar month, or $4k+ per year. Forget about Agonists, Anticholinergics, COMT Inhibitors, Amantadine, Controlled-release, and everything else. Okay, we all know that the Levadopa ‘honeymoon’ is maybe 6 or 7 years when the patient is gradually increasing uptake.

My advice? ASK your Neurologist…and keep asking!

DBS 101: who’s in YOUR head?

In this final paper, we leave the surgery behind and look at hardware. Because the main surgery remains the same no matter the manufacturer. This script is a bit longer and infinitely racier. But, as an added bonus for putting up with me, I’ll include pictures!!

It’s all a bit of a quagmire, so I’m just going to address three companies – the 3 Giants. And just some other prelims: all companies (including Pharmaceuticals) tend to start up in Europe, then Australasia, then the US. The reason is simple: it’s quicker and cheaper to gain CE (European) approval first, Australia’s next. And, as an American myself, I can tell you without any qualms that the reason that it takes so long (10 years…ish) to gain FDA approval isn’t down to them being solely uber-cautious. In Europe, as we know, our health system; being constantly on the verge of collapse (so I’ve been told since a child), is still functioning pretty darn well. I should mention here that you don’t see a lot more suffering or untreated patients here in Europe because of this….quite the opposite in fact. In the US, the costs to get a product to market are between $5 to several hundred millions! Yeah – big ouchy!! That’s partly why Americans pay so much for their prescriptions. The Pharmaceuticals are a powerful body in the US. Pharmaceutical and health devises Annual lobbying alone reached a staggering $270 million-odd in 2009 (currently down to a more reasonable $100 million+). The last thing Pharmaceuticals want is technology threatening their buck, so they fight – hard. Don’t get me wrong – I have nothing against drugs per say….Levadopa, like penicillin, cancer drugs, are wonderful! But, at a cost, as we all have learned.

I should reiterate here that DBS for PD is NOT a cure; it alleviates crippling symptoms and allows the patient to halve their drugs, taking away those awful side-effects. But should a cure come, DBS has done no harm, but good. However, PD without DBS is an unimaginable world of pain that I would not wish on my worst enemy.

Right. Back to the 3 top medical-device companies:

Medtronic. Market leader…in fact, until recently, pretty much the only DBS system available globally. That’s because they gained FDA approval in 1997. They’ve had a number of recalls due to leads being damaged due to twisting – no big shakes in equipment going that long.

St. Jude’s Medical has achieved CE (remember…that’s European) approval last year….so now they’ll be looking for FDA approval to start trials in the US. They’ve had some recalls due to leakage into their IPGs.

Boston Scientific received CE approval in May 2013…about a month after St. Jude’s. There have been no recalls because of their 25-year battery: no need for ‘twisting wires’ or ‘leakage’ as the IPG doesn’t come out.

So let’s look at these systems. To give you a basic picture, you have to know what the DBS components are, where and what they do. Crash course time! The Lead is the coated wire (or wires, if it’s bi-lateral), with the attached electrodes in your brain. They are precision-placed in a pea-sized area of the Subthalamic nucleus – smack, bang in the most inner part just above the brain stem. Then there’s the extension lead that runs down your neck to the IPG – the Internal Pulse Generator or Neurostimulator, situated usually below your collar bone. This IPG contains the main magic and the battery. Like a Sony tech once told me, all components of a CD player are pretty much the same….it’s the speakers that make the difference. As to DBS….now we’re talking: regarding components, it’s really all about the IPG.

PROS & CONS:

Medronic has 4 or 5 devices…it’s all a bit confusing: Their KINETRA and SOLETRA have been discontinued, but they currently have their Activa range – 3 types: a PC ‘primary cell’ (which means the battery needs replacing every 3 to 5 years). RC ‘rechargeable battery’…has the life of up to 9 years, then needs to be replaced. Last the Activa SC its battery needs to be replaced every 4 to 6 years. This last one is also a PC – primary cell, but it requires two IPGs to be implanted…ouch. Then Medtonic’s hoping to introduce their new Activa PC&S system which gathers electrical data as it works inside the recipient. It has received (Europe) CE approval in January of last year. Don’t know what the battery life is on that one, but I got all the figures above from their own website – although a number of their patients indicate they’re quoting a little high on the longevity side. All the US patients I have talked who have primary cell battery told me that it’s standard to have their batteries changed every 3 years. Furthermore, they most often didn’t know that to replace the battery means replacing the IPG – hence the risk of damage.

St. Jude’s has 3 – Brio, Libra & Libra XP.

 Brio has had some problems associated with body fluid intrusion into the IPG.  Again, this is a problem involving surgery for replacing the IPG and battery. The Brio has a 10 year battery life, while the Libra & Libra XP….and I quote from their investors’ site, ‘Additionally, the Libra and LibraXP non-rechargeable DBS devices have forty-percent more battery capacity than any neurostimulators in their class to maximize time between device replacement procedures.’…..which I guess is a mean of maybe 6-7 years for the Libra, and 7-8 years for the XP?

Boston Scientific has one….and I do mean ONE devise for PD patients’ DBS. You know why? ‘Cause it’s all they need. It is perfection.  It’s not really a PC or an RC. The reason being is that the average age on onset in PD is 60 – 65 years. What’s the battery life of their Vercise IPG – 25 years. 25 YEARS…a life-time (for most)!

This also means that Boston Scientific won’t run into the problems the aforementioned companies have; broken leads and seepage. It’s the surgical replacement of these IPGs that causes the problems. A 25-year battery would, in most cases not need replacement. Even if it does? It’s a one-off. No continuous straining of leads and tissue damage.

I’ll just let that sink in.

So why is battery-life so important – can’t WAIT to tell you. Obviously, any further surgery, albeit just replacing the battery, adds risk to the patients’ health but far more important is the cost…..wait for it………….the cost of battery replacement in all systems is roughly 80% of the initial surgery – equipment and all! Now, ain’t that interesting……..

I’ve talked with a few people who have had this done – some a number of times. They are in the USA, so you can probably figure out which company supplied them.

To a one, when I asked why they did not have the RC (rechargeable) IPG, with a 9-year replacement schedule, they said ‘because the remote and recharger are far too difficult to use’ and ‘their insurance won’t cover them for it’ or ‘my doctor says it’s not for the patient to use’……fascinating, eh?

Given that, every time you open a patient to replace the battery, the whole shebang (that’s the IPG) has to come out….adding to the surgery risks; lead-connection problems, damaged leads, and further risk of infection. So why…OH WHY, doesn’t the surgeon replace it with an RC (rechargeable battery)? Two reasons – first, money. It’s cheaper initially, to use a ‘primary cell’ system. Fool’s gold, so to speak, because if a patient were to receive at least a 9-year RC battery, well – you do the math! Second, it appears the view of a lot of US Neurologists deem their patients far too dumb to be able to work the RC type. They have a point. I’ve seen the screens of these remotes, and in the main, everything is symbols – probably for a ‘global market’. However, I can’t imagine a doctor being any better at WingDings than the average Joe.  Given that it’s unnecessarily complicated, it does make sense if the patient is 75, burdened with disease, and alone.

This brings us neatly on to accessories.  Along with all the various systems (including St. Jude’s) comes a remote and a recharger (for those that have a rechargeable battery system).

At this point, I’m dropping St. Jude’s entirely – we know their Brio had rechargeable & remote capacity, and I’ve heard tell that their accessory-systems are much like Medtronic’s. So let’s assume they have something similar for their Libra & Libra XP  - but because I cannot find out enough to make a reasonable call on them, they’re out. So we’ll stick to Medtronic and Boston Scientific.

Let’s start with Medtronic’s Activa RC rechargeable neurostimulator or IPG:

Here’s what one hospital says in their info pack:

‘you can accurately locate the implanted

neurostimulator, properly position the

recharge antenna for recharging the

battery, put on the recharge holster/belt,

and monitor progress while recharging the battery.

(IPG not to scale)

This is what it looks like: she looks happy, eh?

This DBS IPG comes with 4 accessories:

An AC power-supply unit to charge the recharger.

A Recharger (the remote she has in her hand).

One antenna that connects from the recharger / remote to the IPG via a ‘wand’(under the round bit over her collar bone.

A waist belt and shoulder belt.

So, many bits and bobs..,all held in place – rather precariously – by the shoulder strap attached to a large and cumbersome (barely shown) waist belt. I’m presuming all the straps are adjustable…. ergo, I’m also assuming it makes no damn difference to a Parkinson’s patient who has limited dexterity. No wonder he wants a primary cell, huh? Haven’t finished yet – then the patient has to read their status on their recharger remote – good luck on that one, because of the symbols-thing that make texting such fun to a 70 year old..

How long do they have to recharge for? According to their own website, 15 minutes per day or between 4 – 8 hours every 10 – 14 days. Yet, according to a CalTech article - and, just to make it a little more confusing, ‘the patient has to recharge the battery every three days’. Either way, if he forgets, his stimulation will simply stop (which is tantamount to a 3 year old on top of a tall climbing frame suddenly losing their eyesight). If the patient ‘forgets’ more than once, he’ll probably have to have a new IPG.

So…who knows?

One American lady, who has had a total of 3 replacement  Medtronic ‘Primary Cell’ IPG’s (that’s once every three years), and was expecting the 4^th next year, told me that her choice was elective because of insurance, cost and the following:

….. Medtronic needs to work the bugs out on their rechargeable ……………. 

No kidding.

And hospitals and doctors bill a huge amount knowing that they will be reimbursed much less.

She went on to say:

Americans realize that they currently have only one option for DBS in this country--Medtronic. Being that Medtronic is a monopoly, they (the patients) fear complaining too loudly may result in repercussions. So they don't even consider the cost effectiveness and efficiency of another system because they think it's not available to them.

 Next – Boston Scientific’s Vercise.

Yup, that’s it. The whole shebang. The middle thing is the implanted IPG. The thing on the right is the battery recharger, and the thing on the left is the remote; easy to use.

The recharger (shown above) ‘sits’ in a base station which is left safely plugged into the wall. It has a light that turns either yellow or green: yellow means it can only partially charge, green means, well….go.  If you want to see it in action, view my youtube video ‘Parkinson’s, DBS & Pete: the 25-year battery of a Boston Scientific Vercise’. http://youtu.be/astED5bSQX8

My husband keeps his recharger on the base station, plugged it all the time at home. It can’t ‘overcharge’. When he wants to recharge his IPG, he takes it out, pushes the bleedin’ obvious button to turn it on, and puts it into the pouch of a very comfortable and counter-weighted sling that just goes over the neck. Then he usually sits and watches some TV. If he moves too much (reaching for just one more cookie…..mine), the charger will beep, telling him it’s lost its location, so he moves it slightly until the beeping stops. He can wear anything underneath, as it’s not slippery or heavy so there’s nothing to irritate. It will emit a different beep when it’s reached full charge, then he just takes the recharger, turns if off and returns it to it base. How long does recharging take? According to their manual – a few minutes each day or 3 – 4 hours every one to 2 weeks. My husband had his surgery in September 2012, so he checks his remote….it has 3 bars. If he gets down to two, it may take him one or two hours to recharge fully, if he feels like it. But he can go easily a week or more before even having to check it. His remote control is simple to use – very user-friendly. It’ll even tell you to ‘charge soon’ if he’s forgotten. He can ‘marry’ it to his IPG by hovering the remote over it, to get a nanosecond read on his recharge status. He can also easily change the settings himself.

His remote is designed FOR the patient. He can even turn the IPG off and on. It’s like a chunky but small cell phone, has a leather carry case with belt loop, so he carries it everywhere.

Okay. Nearly done: Programmers.

As with all progressive neurological disease, whatever equipment you have will have to be ‘tweaked’ now and then to tailor it to new symptoms.

To try and make this easy to understand (takes me a while), every system from every company has a different set of programming variations – their Proprietary Technology. This is where their smarts lay.

For instance, Medtronic’s Active RC has 8 electrodes – an 8-contact IPG. Boston Scientific’s is a 16-contact IPG. That means a helluva lot for a patient. Not only will it provide for greater variation as his Parkinson’s ‘progresses’, but it allows a finesse of play, a smoothness of delivery in its stimulation, and infinite possibilities in managing future symptoms – via their computer to his IPG. It has a sophistication the others do not have. What’s more, the ‘programming’ problems should not arise, as all his ‘records’ with the same IPG will be kept on a central database.

If you were to look at American (and sadly, a couple of British) PD DBS forums, you’ll find a general and constant cry for ‘Programmers’. This applies to long-term DBS recipients.

Programming is a considerable problem for the patient. As their disease progresses, adjustments must be made within the parameters of their IPG. For instance, Pete has a certain amount of ‘play’ at his current settings of his IPG. As he progresses, so too will the parameter settings. His entire data – from pre-DBS assessment to the end of his 25-year battery is stored by Boston Scientific and the people they have trained as programmers within the NHS and Private Sectors. Therefore, when he needs to ‘up the ante’, the finesse and judgement of play will be made by that collective data and the programmer. I suspect things will go one helluva lot easier for Pete than for some of the Medtronic’s recipients. It’s not to say Medtronic haven’t done the same as Boston Scientific….rather, it’s a problem of longevity, re-education and yes…..gotta say it, the US health system.

Consider that, by the time a patient reaches the stage of the DBS option, you can probably bet he’s been out of a job for some time. So unless he has a spouse that makes a few bucks, his insurance will already be compromised. Then add on the surgery costs of replacement batteries, and if he’s still got insurance, they’re going to vet who his Programmer will be – it ain’t gonna be Einstein. And, let’s be honest, if we’re talking about a 3-year replacement, who cares? Certainly not the insurance company. The programmer has to understand COMPLETELY that particular patient’s requirements, Voltage, Pulse Width, Frequency…all stuff way over my head!

I’ve read many reports of ‘bad programming’ and ‘does anyone know a good programmer’? Or even worse, a resigned ‘I can’t get another programmer because my insurance won’t cover it’. Their own Neurologists don’t seem too interested in this problem, because they’ll just replace the IPG eventually anyway.

One harrowing account I read was of a Dystonia patient who had DBS. Same sorta system; different target in the brain. She had been seeking a new programmer, because at one stage her doctor was trying to increase stimulation to match her needs. No one noticed for some time (because they were all in conversation in the room) that the patient was completely quiet. Once someone did, they realized that she wasn’t even blinking. Quickly, the doctor resets the IPG and it takes a full half-hour for the patient to recover enough to tell them that she was completely paralyzed – couldn’t speak.

Now, do you really want someone who doesn’t TOTALLY understand what he’s doing to mess with YOUR brain??

But, there are good programmers out there. One reported that a primary factor impacting outcome was suboptimal stimulation settings – covering an enormous 52% of patient programming problems.

I know Boston Scientific understands all these problems, and have trained their programmers accordingly. I also know that parameters are in place for the programmer of the Vercise equipment, not only to negate what happened to that poor Dystonia patient, but to allow for very specific tweaking because their technology is so very fine.

I’ve saved the best for last: Technology

Medtronic and St. Jude’s IPGs are fundamentally revamped cardiac pacemakers. That is to say the technology is the same as their cardiac pacemakers.

Boston Scientific’s Vercise is a totally new, revolutionary cochlear technology. Better explain the difference, because it’s HUGE.

Think of the old Christmas-tree lights – remember when, if one went out, the whole lot died? Cochlier technology means that this perilous business no longer happens. If one ‘light’ goes, the rest reconfigure to pick up the slack.

So, it’s your head…who do you want in it?